Discover and read the best of Twitter Threads about #craniocervicalinstability
Most recents (2)
It's still early, but I wanted to share some initial indications of a significant breakthrough in the treatment of my daughter's #hEDS & #MECFS. I attribute progress to Calcium D-Glucarate, a supplement known for improving phase 2 detox of estrogen & other steroid hormones. 1/
The usual caveats: I am a patient caregiver, and not an MD or a medical researcher. It is early. This is just one patient. This is a very complicated area. I am sharing not so much to encourage people to try the supplement but rather to encourage more research in this area. 2/
My daughter is part of the cohort of (mostly) women whose #hEDS took a severe turn for the worse around puberty, prompting #MECFS, #craniocervicalinstability, #POTS, #Chiari, #tetheredcord and other manifestations. This is important context. 3/
2 yrs ago, to raise awareness for the #MillionsMissing due to #MECFS, I started a 🧵 on how tragic chronic illness has consumed my life
But I was too sick to finish, & shortly after uninstalled Twitter. Trapped by illness, unable to advocate.
2 surgeries later... 🧵, 🎬 2
1/
But I was too sick to finish, & shortly after uninstalled Twitter. Trapped by illness, unable to advocate.
2 surgeries later... 🧵, 🎬 2
1/
2017: I was Prof of #Epidemiology @PublicHealthUGA, researching #HIVprevention and #vaccine prep for emerging epidemics. I directed an epi training program @ICI3D. I loved my work & my amazing colleagues!
I was healthy & active 🚴🏄♂️ 🥁
2/
I was healthy & active 🚴🏄♂️ 🥁
2/
Then, I bought a 🏡 and had it renovated. Jan 2018 I moved to the newly built master bedroom addition, I became sick.
⏩ 2 years to 2020. Water burst thru walls on 2 sides of my bed. Revealing walls, subfloor, crawl space filled with mold due to construction defects
3/
⏩ 2 years to 2020. Water burst thru walls on 2 sides of my bed. Revealing walls, subfloor, crawl space filled with mold due to construction defects
3/
